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A video interview with

Brenda Smith Myles, Ph.D.

Independent consultant

Brenda Smith Myles, Ph.D., is currently a researcher, consultant, and author of many books on autism spectrum disorder, including The Hidden Curriculum, Asperger Syndrome and Difficult Moments, and Simple Strategies That Work! Helpful Hints for All Educators of Students With Asperger Syndrome, High-Functioning Autism, and Related Disabilities.

She is currently a consultant with the Ohio Center for Autism and Low Incidence (OCALI) and the Ziggurat Group, and a Scientific Council Board Member for the Organization for Autism Research (OAR) in Washington, DC. Dr. Myles was formerly the President of AAPC Publishing, a specialized publisher of books and multimedia on autism spectrum disorders (ASD) and related disorders for individuals on the spectrum, their parents, families, peers, educators, and other professionals.

Dr. Myles is the recipient of the Autism Society of America’s Outstanding Professional Award, the Princeton Fellowship Award, The Global and Regional Asperger Syndrome (GRASP) Divine Neurotypical Award, American Academy of Pediatrics Autism Champion, and two-time recipient of the Council for Exceptional Children, Division on Developmental Disabilities Burton Blatt Humanitarian Award.

Dr. Myles received her Ph.D. in Special Education from the University of Kansas in 1998.

Transcript

Meet Brenda Smith Myles, autism expert

Hi, my name is Brenda Smith Myles, and I am an author and a speaker in autism. How did I get interested in autism? Well, I think the interest came from a little girl who lived in my neighborhood when I was growing up. Her name was Kim, and looking back at Kim I think that she had autism. And I actually ended up putting a little class together in my basement with Kim and my sister and a couple other students, and I played teacher a lot.

So I think that was the beginning of my interest in autism.

The importance of social skills instruction

Social skills are extremely important to children in the school environment, and indeed in all environments. And in fact, if you look at jobs that individuals with autism have as adults, the major challenges that they have on the job are socially related. In addition there's some research that shows that 14 percent of individuals with autism who did not attend college work full-time — and only 15 percent of individuals with autism who do attend college work full-time. The difference is only 1 percent. Why are we not seeing a better employment rate? Individuals are lacking social skills instruction. It's not provided in college, it generally is not provided in the schools either.

The “hidden curriculum”

The hidden curriculum is the set of unwritten rules — assumptions and expectations, that is — that everyone knows without being taught, and "everyone" means "everyone but people with autism," who have difficult learning implicitly. And the hidden curriculum can impact you throughout your lifetime. A hidden curriculum item in elementary school might be, for example, if someone bumps into you in the hallway, it's probably an accident. If someone says to you, "What's up?" it probably means "Hello." If the teacher is frowning and his arms are crossed and he is tapping his foot, he probably is giving something called the "teacher look," and that means that he wants you to be quiet and pay attention.

As our individuals get older, they may have hidden curriculum challenges regarding establishing romantic relationships, because as we know there are several unwritten rules that have to do with establishing relationships. "Yes" may not mean yes, "no" may not mean no, and who knows what "maybe" means?

In adulthood the hidden curriculum is extremely important. You have to understand things such as if your boss asks you to do something, it really is not a request. It is an order. The hidden curriculum is as I said earlier so broad and we have to begin teaching it when children are young and continue throughout their lifetime.

Children who are neurotypical pick up a lot of information from the environment. They are able to learn implicitly. Individuals with autism however, who are wired a little bit differently, have challenges in picking up information that is implicitly learned. And three areas that are implicitly learned by most people are social, communication, and daily living skills.

These skills are generally not taught, and because of the neurology of autism, this is where our students have challenges.

Idioms, metaphors, and figures of speech

Well, idioms, metaphors, and figures of speech are part of the hidden curriculum because we assume that everybody knows what these words or phrases mean, but in all actuality our individuals with autism do not.

Individuals with autism quite often are puzzled by language that is non-literal. Let me give you an example. A teacher and paraprofessional I know were just absolutely wonderful and one of the things that they were doing was they were preparing their middle school students to go to a school dance.

And so they practiced dancing, asking someone to dance, what it was like to get a drink of punch, how to hang out and look cool. Well, the night of the dance the teacher was there, the paraprofessional was there, the kids were at the dance, they were dancing, they were hanging out, they were doing amazing things. And the paraprofessional was so excited when she saw one of our kids, Jeffrey, out on the dance floor.

And she said, "Jeffrey, get down!" And Jeffrey dropped to the floor. He did not understand that non-literal language.

After that and after Jeffrey dropped to the floor, she hurriedly went out to the dance floor and just whispered, "Jeffrey, I meant that was really great, get up!"

Breaking the social rules

Okay, what do you mean by "breaking the rules of the hidden curriculum"?

One example of how the hidden curriculum, if you don't understand it, can be problematic often occurs at conferences that include adults with autism. And what you may see is that some adults have not been taught the hidden curriculum rule that you should not be the person that speaks the most as a participant.

And also relative to that, not to answer rhetorical questions. I've been in many presentations where individuals with autism have not been taught these two pieces of information, and as a presenter is presenting, the individual is answering every rhetorical question, answering every question, and making comments.

And the individual thinks that he or she is participating appropriately, but the rest of the audience generally becomes a little peeved, because they're not able to hear the presentation in a way that they had hoped.

Teaching the hidden curriculum every day

General education teachers can easily teach the hidden curriculum in their general ed classes. If they would only teach one item per day, if they would start the morning with one hidden curriculum item, talking about that hidden curriculum item, and then asking for a couple of examples relative to it — writing it on the board or showing a brief video.

If they would invest three minutes each morning, they would cover 180 hidden curriculum items each day.

Out and about: success for kids with autism

Well, the Hidden Curriculum Ecological Assessment allows educators, parents, and individuals with autism to look at the environment in which their child participates and identify potential hidden curriculum items. And that serves as a starting place for assessment and instruction.

Well, on a Hidden Curriculum Ecological Assessment, you may see how to act in a group, how to interpret the teacher's nonverbal instructions, how long you should speak when you are answering a question, what you should do if someone doesn't want to participate in an activity with you. Those are just a few of the items.

Amy Bixler Coffin and Jill Hudson have a book called Out and About. It is a marvelous book and it has a template that helps parents make sure that their children's needs are met when they go out into the community. And it has items such as what kind of visuals does the individual need? What hidden curriculum items exist in that particular environment? What sort of supports might the individual need that are verbal in nature?

How long should you plan to stay? And if parents would take five minutes to complete this template, they will have, more or less, a recipe for success for their children interacting in that particular environment.

Out and About also is brilliant in that not only does the parent or teacher understand what the individual needs when they go out into the community, but it's shared with the individual with autism. And in so that way, the individual himself or herself has a template for success.

Self-management of meltdowns

About 50 percent or more of our individuals with autism experience meltdowns, and these meltdowns are neurologically based. Research has shown that the areas in the brain that are responsible for regulation are under-active in individuals with autism. And so they experience a three-stage cycle. They experience rumbling, the then rage, and recovery.

At the rumbling stage what you see are small behaviors that are indicative of the child being uncomfortable, and these behaviors could be things such as drumming your fingers on your desk, swinging a leg, pulling at your eyebrows. Generally at that stage what you'll want to do is interventions that distract and calm the individual. About 75 to 80 percent of the time, if you recognize that rumbling behavior and implement those strategies, the child will go back to his typical behavior. If not, he or she would move on to the rage stage, and the rage stage is that stage where you actually see that negative, overt behavior. Now that behavior also could be withdrawal, but most often it is overt behavior. And at that stage what you want to do overall is to protect the child, protect the environment, and protect other people in the environment so the meltdown can run its course.

The third stage is the recovery stage, and this is a stage where after the child has endured the rage — which is horrible for the child — this is the stage where he slowly gets back to his typical behavior. And at this stage you want to provide interventions that allow the individual to become more calm, which include things such as putting him back into a structure, because our individuals like structure, and to make sure that you are consistent without putting a lot of demands on the individual. The most important thing about the cycle of meltdowns is to make sure that you are teaching the individual to recognize how he is feeling, and to teach those strategies to calm himself down or herself down before they get to the rage cycle.

Kari Dunn Buron and Mitzi Curtis created the Incredible 5 Point Scale, which is a scale that helps individuals to understand what a behavior looks like, what it feels like, and what they can do. They've divided the scale into five different levels, although the scale could be two levels or three levels depending upon what the child needs. But this is really a self-management tool where the child can become in control of the interventions that they need.

So the individual will learn, "Oh my gosh, when I swing my leg, that means I'm at a two, and that means I need to get up and take a walk. Then I can calm down." So it is more or less a individualized recipe, if you will, of strategies that the child could do at each level of a behavior that he is experiencing.

The Incredible 5 Point Scale can be easily learned by children across the spectrum. It is extremely concrete. The child is in control of the intervention, and it translates across environments. I've worked with individuals from ages two to over 40 who have used an Incredible 5 Point Scale.

Sensory challenges in autism

With activities that are sensory-based, we are either striving to alert the child — the child who may be a little sluggish, who needs to attend — or we may be trying to calm the child if that child is overwhelmed.

Alerting and calming activities generally have to be matched to the individual. For example, some children may calm with heavy work, which means that you may ask them to carry several books down the hall. Other children may find the opposite reaction, and so it's important that you match the child's needs to the activities.

For some children for example, going to get a drink of water can be calming, but for other kids it can be alerting.

Seeking out insight from parents

Anytime a parent can share their child's strengths and needs, educational professionals will benefit. No one knows a child better than the mom and dad, aunt, uncle, grandmother, grandfather, whoever the primary caretaker is. And in the educational community, we have to seek these people out and try to get that information because that will make our job much easier and will allow the child to be more successful.

Getting to know your students with autism

Educators have many ways that they can get to know the child with autism. They can talk to last year's teachers to find out about that child. They can talk to the parents. They can talk to the child himself or herself. If there's video that's been taken for data collection and the teacher can have access to that, that can be valuable. The IEP can provide some information but generally does not provide enough detail so that you know the essence of that child.

You may know what he can and cannot do, but it's likely that you really will not know the child. Developing a relationship with the child is extremely important. There's a large base of research that says one of the most powerful interventions that we can use is the relationship that we have with the individual with autism.

Creating a positive learning community for students with autism

It is possible to create a positive learning community for our children with autism in school. One of the ways this can happen is by using the student's special interest, and to talk about that special interest in a positive manner and involve other children. Another way is simply by having a positive attitude toward the child. For example, if a teacher sees our child answer a question correctly and says out loud to the class, you know –

"Jeff, that was an excellent answer." Then the entire class will see that the teacher views that child positively and that will help shape their opinions. Conversely, if a teacher rolls her eyes or rolls his eyes at a student, the opposite will happen.

Peer relationships can be developed in the classroom. There first of all are a lot of curricula out there that are extremely helpful. For example, Jennifer Schmidt has PEERspective, which is a curriculum that teaches general education students and students with autism how to relate to each other. There's also the PEERS Curriculum, there's Conversation Club.

Even in the absence of a particular curriculum, pairing students together who have similar interests and similar temperaments can work extremely well. What you do is also you can find a high-status peer in the classroom who is viewed positively and who is also a very nice person, and pair the child with autism with that high-status peer.

Because once that high-status peer and the individual with autism have a relationship, other peers will come.

Understanding builds empathy

I am very supportive of people understanding other people. Whether that person has autism or, you know, whether that person has a lot of freckles or, you know, whether that person is sensitive to eating certain foods. I think having a frank discussion about an individual's characteristics with that individual — either doing the presentation, participating in the presentation — is extremely helpful. Particularly in the area of autism where many of the things our students do are misunderstood. Also because so many people understand autism now, when you say the word, people have empathy.

Also there are many kids in classrooms who will go home and point out to their families, "I think Johnny has autism, but nobody has said it yet." And by bringing that to the forefront, what you're saying is, "Autism is part of the human condition and we should discuss it." So I think that the more that we talk about each person as an individual, the better off we all are.

Creating predictability in the classroom

Teachers can create predictability in the classroom in a number of ways. First is having a schedule in place, a schedule for the day and then a schedule for each activity, so that every child in the classroom knows exactly what is going to happen.

Predictability can also be created by making sure that places for materials are labeled, so that everyone knows where everything is. Priming is an intervention that can also create predictability. Priming was created by the Koegels, and this intervention occurs when an adult sits down with the child either at the beginning of the day or at the end of the previous day and reviews what is going to happen during each activity, and that is done along with a schedule. So by the time the child begins his day, he knows exactly what is going to happen. That will increase engagement and decrease anxiety.

Visual supports in the classroom

Visual supports, in my estimation, are a constant that should be available to the individual. We know that our individuals are visual learners, and truly if we want our individuals with autism to understand what we are teaching, they need to be able to see it. And so as much as possible we need to make sure that we have schedules, that we have home base cards, that we have break cards, that everything that we expect the individual to do can be accessed in a visual format. And this applies to individuals who read as well as individuals who don't. So our visual supports could include words or they could include pictures. They can also be used in home, school or community.

Many general educators think that providing visual supports in the classroom can be challenging, largely because they haven't been taught how to create visual supports. After that instruction occurs, and general ed teachers implement visual supports, what they find is that these supports help everyone in their class. Further, it also helps the teacher, and if there's a paraprofessional it helps the paraprofessional, because it clearly visually communicates what is supposed to happen, and helps to keep them on track as well.

Addressing reading comprehension challenges

Our students tend to be rote learners. They also tend to be sequential learners, which means that quite often they can benefit from reading strategies such as phonics. They can learn to put words together in that way, but the issue is that even though you can sound out a word or put the word together, it doesn't mean you know what the word means.

And where our kids have challenges is in that global area of comprehension. There are many things that you can do to address comprehension challenges, but one that works really well is called language experience approach. And that is where you work on vocabulary and you write stories out of the children's experiences.

And so the words directly have meaning to the child because he has experienced what you are writing about.

Assistive technology for kids with autism

We are living in a time where assistive technology is phenomenal for our individuals with autism. And in many ways we want individuals with autism to do what we are doing. We use assistive technology, we have calendars, we have our word processing programs, we have spreadsheets. Our individuals with autism need to have access to AT as much as possible.

For example, handwriting is a challenge for our individuals with autism, and quite often it is so labor-intensive for our kids that many of them will have meltdowns. If we teach keyboarding what happens is the individual is able to produce written information, and we are also teaching a life skill.

We can have high-tech, we can have low-tech, but what we really need to do is to really look at what the individual needs and to provide them. And handwriting is in this day and age is an easy one to modify. We can also use AT to teach comprehension. Audiobooks are a great way to begin to teach comprehension to our individuals with autism who may have a greater ability to understand than the ability to word-call.

Moving to a strength-based model

Individuals with autism bring a lot of strengths to the classroom, and we really need to be moving from a deficit-based model to a strength-based model when teaching our individuals with autism. Individuals with autism are strong visual learners. They want to comply. They want to follow the rules.

They want to have friends. They like details, they like facts. They are consistent, they will never be late to work or late to class. They are extremely predictable. All of these things – if we will tap those and further develop them, we can use those to teach the skills that individuals do not have. But this foundation, really, when enhanced, provides for a successful adulthood.

Cooperative learning groups

In cooperative learning groups quite often different students will be assigned different roles on research projects or activities. And in many cases cooperative groups are very conducive to the learning of individuals with autism. They can be assigned a role — for example, an individual with autism may be assigned to be the note-taker using a computer.

Another individual who likes to do research may be assigned to research a particular area. Another student who likes to write may be assigned to, you know, write the opening and ending paragraph. A student who illustrates may be assigned to illustrate the project. By doing this, our individuals will be able to focus on one task, and that will allow them to do that task well.

Imagining the ideal classroom for kids with autism

What would an ideal classroom look like for individuals with autism and their neurotypical peers? Well, first of all I would have a practical IEP for every child in the classroom. And that practical IEP would be the Comprehensive Autism Planning System, which is simply a document created by Shawn Henry that shows exactly what supports the individual needs for each activity of the day.

And the CAPS is broken down into different categories such as skills to teach, sensory supports, reinforcement, social communication supports, data collection and generalization. And if every child had a CAPS on their desk for reading, the individual himself or herself could look and say, "Okay, for reading I need to focus on comprehension."

"I need to read the paragraphs that are highlighted. After I'm done I'm going to get five minutes of free time. It's a little loud in here for me so I'm going to be wearing my headphones. And I'm going to be doing a worksheet on the computer, and the data that's going to be collected is how long it took me to do it and how much did I get right."

And so if every child had that strip of paper on his desk, the teacher could go by quickly and check to see if every individual had the supports that they need, because kids who are in general ed who do not have a special ed label still need supports. So that would be one thing. Another thing that I would do was to make sure that we include teaching skills such as executive function, theory of mind, understanding other people's perspective; central coherence, understanding what's important and what's not important; relationship skills, and the hidden curriculum.

Sensory challenges with autism

Ninety percent of children with autism have sensory challenges, and there are eight sensory areas. Our children are impacted diversely. For example, some can tell the difference between generic Pop Tarts and the real thing, even though you take the generic ones and put them in the real box. Others can tell if their parents have changed laundry detergent by the way their clothing feels on their body.

Others can hear someone speaking in another room that you and I cannot hear. Still other people may not have the ability to know how to judge how to walk through a door without hitting the doorjamb. Another sensory issue would be not being able to tell when you have to go to the bathroom, or to tell that you are hungry.

In the area of sensory it could be something as simple as a teacher wearing perfume or cologne and not realizing that for the student that smell is overwhelming. Or not realizing that when a teacher may raise their voice just a tiny bit, that the individual is processing that auditorily as a scream. So there are so many things that a teacher can do in a classroom without realizing that it can be problematic.

The truth is that sensory impacts every aspect of everything that we do. And with this many people on the spectrum experiencing these challenges, we really have to understand what those challenges are for specific individuals and design intervention plans. And we need them to be implemented not only by occupational therapists but by general educators, special educators, and speech-language pathologists.

Many schools will have sensory rooms in place, where students can go when they become overwhelmed. And that's absolutely, you know, wonderful. However, we have to make sure that our individuals with autism, if those rooms are not available, have other options when their senses are behaving in a way that is not appropriate for them. And so we need to make sure that they're able to access a room or they're able to close their eyes and screen things out.

We need to provide multiple ways because our individuals are not always going to be in that particular school where they have that sensory room. But while they do, it is a wonderful place for them to spend time.

Preparing our teachers to teach children with autism

I think there's several things that we could be doing differently and better in order to prepare our teachers to teach children with autism. First of all we need to make sure that when they are learning from either school-based or university professionals that they are learning from professionals that actually have experience in teaching children with autism.

In addition we need to make sure that our teachers have access to materials, and we're very fortunate there's a number of free materials out there at this point in time. For example, OCALI has the AIM modules that are free — there's over 60 modules. Texas has TARGET, designed for general and special education teachers that highlight evidence-based practices.

One of the most important things that we could do however is have a mentorship program, whereby experienced teachers work with new teachers to implement. Research shows that the most valuable experience that pre-service teachers have is when they do their student teaching or their field experience, because that's where they learn. So they need more field experience in university, but they need that continued development when they get into schools. Right now teachers teach in isolation, and so when there is a problem, there isn't anyone who you can depend on, that can come into the class and help you brainstorm, or help you model what needs to be done.

There are a number of places that are doing mentorship programs. In Kansas we have a number of school districts who have mentorship or peer-coaching models, where teachers are — new teachers are assigned a peer mentor and that peer mentor actually is provided some release time to work with that new teacher.

Listening to the voices of individuals on the spectrum

I think that the field of autism is growing in a very positive way. We are starting now to listen to the voices of individuals on the spectrum, because they have so much information to provide us. We are also focusing more on the skills that I think are very important for life instead of just focusing on traditional academic areas.

And so we see an interest in social skills, job preparation skills, the hidden curriculum, executive function. So I think that those are the trends that I am seeing, and I think it's because people are finally realizing that our folks with autism do become adults, and that they need to operate in the real world. And so there is an interest in teaching skills that are real and practical.

Mental health issues with autism

One of the issues that we need to focus on a little bit more— actually a lot more — are the mental health issues in individuals with autism. Our newest research shows that the vast majority of our individuals with autism will have at least one mental health challenge, whether it's anxiety or depression or obsessive-compulsive disorder. And we are really just recognizing that, and we need to get to the point where we can provide mental health interventions to our children.

It's a huge issue, and we've really haven't grappled with it at all.

A friend with autism: Judy’s story

Oh, can I share a story about an adult with autism? I would like to tell you about one of my good friends with autism, primarily to illustrate how it's never too late to learn. My friend Judy is about my age, and about 10 years ago when she went to a conference someone went with her.

Someone stayed in the hotel with her, when she went to the airport someone was with her. And she decided that she wanted to become more independent. And so she invested some time and sought out some people to teach her about these specific things. And so she learned that categories exist, that there are patterns in the environment, because we assume that everybody knows that.

And as a result, two years ago she went to Paris by herself. To me, Judy is remarkable. She's absolutely brilliant, probably the smartest person I know, but that story says to me that anyone can learn anything at any time, and we should never sell anyone short. Just because you haven't done it yet and you're 50 years old doesn't mean that you can't do it in the future. The same applies to a two-year-old, an eight-year-old, or a 12-year-old. We have to keep in mind that what Lee Stickle says is important, and she says that the potential of individuals with autism is limitless, and individuals with autism are only limited by what we teach and support.